Tired All The Time

A Chat With Dr. David Bell
Dr. David Bell was trained as a pediatrician, but started investigating chronic fatigue syndrome in 1985, when an outbreak of CFS hit his home community in upstate New York. Since then, he's published dozens of papers on the subject and has written The Doctor's Guide to Chronic Fatigue Syndrome. This online chat originally appeared on the ABC news website, abc.com, on May 11, 1998. We are publishing the most beneficial aspects of the chat for our readers. The names of those participating in the chat have been omitted, but their questions remain "as asked".

Question:
How can you distinguish between just being tired and chronic fatigue? What are the most telling symptoms?

Dr. David Bell:
Chronic Fatigue Syndrome and chronic fatigue are two separate entities. Chronic fatigue is experienced by up to 25% of the population and may be due to the stresses of everyday life combined with poor sleep. Chronic Fatigue Syndrome is a specific illness where the fatigue is so severe that it prevents normal activities. In addition, there are numerous symptoms including headache, joint pain, abdominal pain, muscle pain, which in combination with the fatigue, allow the diagnosis of CFS.

Question:
What is the prognosis? How many people get well?

Dr. David Bell:
The question of prognosis has been debated for many years and the difficulty has been because of the definition of CFS not being well defined in the past. My feeling is that approximately 60% of people with CFS return to a good functional level within 3-5 years. 20% remain fatigued to a moderate degree and 20% have a severe debilitating course.

Question:
Are there any medications which help this condition?

Dr. David Bell:
In general, there are three types of treatment strategies. The first strategy is symptomatic treatment, and there are, perhaps, 30 different medicines, which can be used for specific symptoms. A simple example of this type of treatment would be the use of aspirin for a headache. The second category of medicines would be general medicines, which tend to improve the overall level of fatigue and functioning. An example of this category would be medicines which improve sleep quality or medicines which have an inherent value in increasing activity. The third category of medicines would be experimental medications, which are used in an attempt to correct the underlying pathophysiologic abnormalities. At the present time, there are no medications in this third category that have proven universally effective. And, the majority of treatment is devoted toward symptom reduction.

Question:
Is CFS in any way connected to Fibromyalgia?

Dr. David Bell:
Among researchers in CFS and FM, there is a diversity of thought. Most researchers assume that these two conditions are related and overlapping illnesses. My personal feeling is that they represent the same physiologic illness, although in CFS, fatigue and weakness are the most severe symptoms, while in FM, pain is the most severe symptom. The pattern of the symptoms in both illnesses appears very similar.

Question:
Does being overweight affect or increase the chances of having chronic fatigue syndrome?

Dr. David Bell:
The question of CFS and obesity is a complex question and up to 80% of people with CFS have difficulty in maintaining normal weight. There are several reasons for this. First, because of the fatigue, patients with CFS are unable to be as active as previously, and therefore, tend to gain weight. Secondly, when people are feeling ill, sometimes they will eat more between meals than they had previously done. Thirdly, I feel that there is some metabolic abnormality, which is present in CFS, which decreases the basal metabolic rate. This is one of the reasons why people tend to have a low temperature and feel as if they have a fever when their temperature is only 99 degrees. Thus, there is a relationship between CFS and being overweight, but I do not feel that being overweight causes CFS.

Question:
What causes chronic fatigue? Is it a virus?

Dr. David Bell:
I wish I knew. The list of hypotheses about the cause of CFS extends to nearly 50 different theories. My personal feeling is that CFS represents an illness, which can be triggered or started by viral infection. But, it is not an illness caused by an ongoing viral infection. A similar situation exists for polio. The polio virus initiated the illness and then disappeared. The injury caused by the polio virus then led to a long lasting disability. But, polio is not an ongoing viral infection. Specifically, I do not feel that CFS is contagious, although the initiating viral infection may be.

Question:
There are some doctors who disapprove of the use of anti-depressants as a treatment, such as Dr. Ali, author of The Canary and Chronic Fatigue. However, anti-depressants are one of the most commonly prescribed medications to CFS-ers. Do you feel that anti-depressants are an effective way to treat CFIDS? Why or why not?

Dr. David Bell:
Antidepressants, I think, are very useful as treatment agents in this illness, although I do not feel that depression is in any way the cause of CFS. Many persons with this illness will have an improvement of their activity by 10-30% using certain antidepressants, and this is independent of the degree of depression that the person may be experiencing. Secondly, some antidepressants can be very useful as symptomatic treatments for the pain and sleep disturbance seen with CFS.

Question:
I'm interested in your recent work on low blood volume in CFS. Could you talk a bit about that and, perhaps, whether you're close to a treatment that would increase blood volume?

Dr. David Bell:
Recently, I published a paper with Dr. Streeten which showed that the majority of patients with CFS have decreased red blood cell mass and many of these patients also had decreased plasma volume, which led to an overall decrease in circulating blood volume. As an example, if the normal adult has five quarts of blood in their body, the average patient with CFS has only four quarts. This may be the reason that CFS patients feel worse after blood draws and are frequently very thirsty. The question that we are currently working on is what is the mechanism that is causing this decreased circulating blood volume.

Question:
Has the general medical community finally accepted that CFS is real and not just in your head? What direction is present research taking in finding a cure or an effective treatment?

Dr. David Bell:
I have been gratified that the majority of physicians are coming to accept CFS as a legitimate and debilitating condition. Five years ago, I rarely saw a patient who had been diagnosed with CFS by their primary care physician. Now, I rarely see a patient who has not already received a diagnosis. In terms of the research, I feel that there is a tremendous increase in good research, particularly in the areas of the autonomic nervous system. I feel very optimistic about the future.

Question:
Is this condition known to contribute to or act as a predecessor to more serious illnesses, like cancer?

Dr. David Bell:
No, this condition does not act as a preceding condition for any other illness. In a recent study which I conducted, 45 children were diagnosed with CFS between 1983 and 1986. None of those children, now 15 years later, developed any other medical illness that could have explained their symptoms of fatigue and exhaustion. Specifically, none had MS, cancer or lupus.

Question:
I know that CFS is more common in women than men, but are there any other factors that generally characterize CFS sufferers?

Dr. David Bell:
The sex incidence does appear to favor women and in this regard, CFS is similar to many rheumatologic conditions. However, in children, the sex incidence is more nearly equal. I do not feel that socioeconomic status is a predisposing factor for the illness.

Question:
I work in a hospital where tilt table testing is done and it seems as if people with CFS or FM have a much higher incidence of positive results. However, some doctors don't know which came first, the dysautonomia or the CFS. What is your opinion?

Dr. David Bell:
One of the exciting areas in research on CFS involves the tilt table testing. It appears that persons with CFS are very likely to have abnormal responses in the upright position. This probably is the reason why people with CFS have orthostatic intolerance. What this means is that they are unable to stay in the upright position for a normal amount of time during the day. In fact, orthostatic intolerance is a much better description of the disabling symptom of CFS than is the word fatigue. The reason why the tilt table test is abnormal may be related to dysautonomia (abnormalities in the autonomic nervous system) and may be related to decreases in the circulating blood volume. Either way, it is an exciting new area of research.

Question:
Is there any relationship between CFS and EB Virus?

Dr. David Bell:
In 1985, there was an initial belief that there was a relationship between CFS and Epstein-Barr virus. However, it now appears that there is no etiologic relationship between the two.

Question:
Is there a connection between an underactive thyroid and CFS?

Dr. David Bell:
Many people who have fatigue have an underactive thyroid. In these patients, replacing thyroid hormone should eliminate fatigue. In persons with CFS, treating with thyroid hormone does not seem to improve the condition. However, how many people with CFS have abnormalities within the thyroid is unknown.

Question:
Where has this disease been in years past? And why has it just been surfacing in the last few years?

Dr. David Bell:
I feel that CFS has always been an important medical condition but has been unrecognized because of the only recent advances in infectious disease. For example, it may be that Florence Nightingale, who had a complex medical history, may actually have had CFS. But, it has been only recently that the variety of conditions formally associated with CFS have become recognized.

Question:
What is the relationship between mycoplasma incognitus and CFS?

Dr. David Bell:
At present one of the theories of the cause of CFS is this unusual bacteria. However, as with all the other theories, this one has yet to be proven correct. It is an area of active research by a number of good researchers.

Question:
In what specialty of medicine should we look for as patients when we want to find a doctor since we have so many complaints and we don't want to see several doctors?

Dr. David Bell:
The specialty which should be assuming responsibility for CFS would be your primary care physicians. What is necessary for a person with CFS is a compassionate and caring physician who will be both thorough and complete in looking for causes of fatigue and who will be able to support the patient through what can be a very difficult illness. At present, there is no great advantage in seeing a specialist in CFS.

Moderator:
That's all the time we have. Unfortunately, we couldn't get to everyone's questions. But for more information on CFS, a good place to call is the Chronic Fatigue Immune Dysfunction Syndrome Association of America at 1-800-442-3437 or 704-365-2343.